The Leukemia & Lymphoma Society - Fighting Blood Cancers
31 Replies Latest reply: May 17, 2012 8:16 AM by pammartin RSS

This got my attention ...

scuba Registered Users
Currently Being Moderated

I received this today from Bristol-Meyers Squibb. Nice packaging. Makes me eager to take this stuff.

 

(p.s. this is a free Sprycel sample - like I have a choice)

 

BMS_small.jpg

  • Re: This got my attention ...
    triciad Registered Users
    Currently Being Moderated

    Hi Scuba-

     

    I know what you mean.  My Tasigna boxes have stickers all over that say "cytotoxic agent...dispose of properly".  And we get to ingest it. 

     

    It's keeping me alive so no complaints.

  • Re: This got my attention ...
    CallMeLucky Registered Users
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    Now we can have another lengthy debate about how TKI drugs are not Chemotherapy (despite the bold neon font)

    • Re: This got my attention ...
      Susan61 Registered Users
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      Hi Lucky:  I always refer to my Gleevec as my Oral Chemo.  If its killing cancer cells then its a Chemo.  I know this has been discussed before.  I do not care what they call it, its CHEMO.

  • Re: This got my attention ...
    CML_in_ATL Registered Users
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    That's funny!!  My latest Gleevec packaging had this as well.  I regret throwing out the label -- I should hang it on my office door, so that folks will leave me alone and let me get some real work done.

  • Re: This got my attention ...
    0vercast Registered Users
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    Who'd want to put that in your mouth?  That's what my Hydroxyurea package looked like.  Rather than wash my hands afterwards, I was instructed to wear glove to handle my own pills so that I wouldn't spread it around the house.  They made a big deal about it.  Gave me gloves and everything.

    • Re: This got my attention ...
      pamsouth Registered Users
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      Overcast, Ref to Hydrox;

       

      Right and I took Hydrox for about a month to bring down platelets counts and waiting to see if I wanted to go on a clinical trail.  Wish I had never taken the stuff.  But what did I know back then.  Toxic poison. Sent me to the hospital felt like I had an elephant on my chest.  The onc said oh your body just going thru changes.  Easy for her to say, what do you do when you have heavy weight on your chest and you can’t breath.  Tell you what I did against doctors order, cut my hydrox in 1/2.  I least I could breath and the pressure left.

       

      PamSouth

  • Re: This got my attention ...
    pamsouth Registered Users
    Currently Being Moderated

    For (ME) all practical Insurance purpose, this phrase is critical;  (or I am in trouble with my insurance)

     

              "“ONGOING ORAL CHEMOTHERAPY DRUG”” 

     

    In the dictionary, look up cancer and chemo. 

     

    PamSouth

  • Re: This got my attention ...
    Trey Registered Users
    Currently Being Moderated

    It is less about pharmacology and more about lawyers.

     

    The term "chemotherapy" means literally "chemical therapy", but the usage of the term is reserved for potent agents that are not targeted.  As a "biologically targeted therapy", Gleevec is more like a bullet, and chemo is more like a shotgun.  If someone took chemotherapy every day, they would not survive very long, since it kills a lot of good cells along with the bad.  Also, you will never hear Dr Druker, Dr Shah, Dr Goldman, Dr Talpaz or any of the most notable CML experts call these CML drugs "chemotherapy".  Dr Druker's bio makes a point to distinguish Gleevec from chemotherapy:

    "He began treating patients in a community cancer clinic half a day a week—an  experience that cemented his desire  to develop targeted drugs to attack cancer cells without the harmful side effects of chemotherapy."

    http://www.hhmi.org/research/investigators/druker_bio.html

    (See  para 3)

    If someone says the "broader" use of the term would apply to TKIs, then it would also apply to aspirin and every drug that is not a naturally occurring substance.  But if Dr Druker refuses to call TKI drugs "chemotherapy" then so shall I.

  • Re: This got my attention ...
    Happycat Registered Users
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    Love the picture, thanks for the laugh!  It is ironic that they package it with that label, then have us ingest it.  What a hoot!

     

    Trey is bang on about the lawyers. It's all CYA.

     

    As a chemist, I handle stuff like this in the lab, but I always wear gloves there. At home, I just handle the pills with my bare hands. And I don't even wash them afterwards (le gasp, as my dd would say)!   Product safety pretty much mandates that you don't send people home with drugs that would cause problems just from handling it. In such cases, there's a coating to prevent dermatological contamination. (All bets are off if you break the pill and handle the powders inside though.).

     

    I won't even go into chemo definitions - but I will say this - Better living through chemistry, yeah, baby!

     

     

    Traci

    • Re: This got my attention ...
      pamsouth Registered Users
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      Happy Cat,

       

      Regarding “>>(All bets are off if you break the pill and handle the powders inside though.)<<

       

      What happens to those who break the drug open to dissolve it in water and ingest it?

       

      What happens when the pill breaks down in the body?

       

      PamSouth

      • Re: This got my attention ...
        Happycat Registered Users
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        Pam,

         

        That depends on the drug. Skin is a pretty good barrier, so as long as the material isn't too caustic, it is likely fine. But you should wash your hands, don't leave the chemicals on there. Some things will cause irritation after a prolonged period, so always wash if you handle the powder.

         

        I would contend that if manufacturer says you can crush a pill and dissolve it and drink it, then it is not likely to be all that harmful to the skin. They don't want to get sued for causing burns, so if it isn't safe, they would not tell you to do it. Still, it is always good practice to wash your hands.

         

        Some drugs (like real chemo) are incredibly toxic. Thus, you will see nurses who administer it wearing gloves. The really toxic, dangerous drugs are generally administered by qualified medical personnel. And the patients are monitored. Only relatively safe drugs are prescribed for home use and self administration.

         

        Traci

        • Re: This got my attention ...
          Susan61 Registered Users
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          Hi Traci:

               I see the concerns over the powder inside the tablet.  So many people break their 400mg tablet in half to take 200mg at a time.  I never heard of any concerns, but I did read that a pregnant person should not handle the pill.

          If my Oncologist decides to switch me to 200mg, and I still have my 400mg. tablets left I was going to break it in half.

          Also they are scored for that purpose.  My other question is if Gleevec comes in 200mg. tablets or do you have to get 100mg.  I ask this because I was checking with my pharmacy pricing, and there was no 200mg tablets listed.  Only 400 and 100.  Like you said wash your hands after handling.

        • Re: This got my attention ...
          pamsouth Registered Users
          Currently Being Moderated

          Happy Cat,

           

          Every month Medco call me to schedule my Gleevec Shipment and ask a few questions.  A few months ago when Medco called she said there was a new rule you could not crush the Gleevec but it was Ok to cut where the 400 mg are scored. 

           

          I recently read where someone on the board was dissolving the TKI in water to take.  That got me to wondering what is the difference between crushing and dissolving in water.  I asked the lady from Medco, why the new warning, as I have been taking Gleevec since 2005, she did not know.

          I did talk to the pharmacist, he just said I could cut where the 400mg is scored but not to crush, no reason why.

           

          Susan,  back when I first started on Gleevec in 2005, when my white cells got down to 1.7 I had to go in the hospital for 3 days of IV antibiotics, then a drug holiday, then when back on low dosage until my white cells came back up.

          At that time there was only 100mg and 400mg of Gleevec. That has been a few years ago, I don’t know if they have changed, what mg they come in.

           

          PamSouth

  • Re: This got my attention ...
    0vercast Registered Users
    Currently Being Moderated

    The term "chemotherapy" has a stigma attached to it.  I think from a doctor's and patient's standpoint, it's best not to call it chemotherapy.  Nobody want to do "chemo."  Most people who aren't all that familiar with cancer are scared of that word.  You mention "chemo," and they wonder why your hair hasn't fallen out (true story).  It's infamous for making people feel lousy, making them look and feel like "cancer patients."   Calling it something else will naturally put a person mind more at ease with their treatment, and that might actually affect their physical well-being.

     

    For that reason, even if TKI drugs were actually chemotherapy, I would probably refer to them as something else.

  • Re: This got my attention ...
    WoofWoof Registered Users
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    My Tasigna comes in the same type of bag, I re-use the bag & never have a problem with anyone trying to take my stuff.

  • Re: This got my attention ...
    PhilB Registered Users
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    Triciad posted:

    "My Tasigna boxes have stickers all over that say "cytotoxic agent...dispose of properly".  And we get to ingest it"

     

    Overcast posted:

    "Who'd want to put that in your mouth?  That's what my Hydroxyurea package looked like."

     

    Whilst Happycat posted:

    "It is ironic that they package it with that label, then have us ingest it"

     

    I think I may have found the solution to some of the gastric problems people have been suffering.  YOU ARE NOT SUPPOSED TO EAT THE PACKAGING!

    • Re: This got my attention ...
      billronm@roadrunner.com Registered Users
      Currently Being Moderated

      Hi Phil,

        I thought because of the price of our meds we were supposed to devour everything! I guess I better stop making my famous cardboard casserole.

          I hope you and your family are doing well.       Sincerely Billie

  • Re: This got my attention ...
    pammartin Registered Users
    Currently Being Moderated

    Scuba,

    The first time I received my Sprycel it looked very much like your packaging on the inside of the box, but the outside was very reserved.  Then the box is opened, first one finds the packaging bubble wrap that has red and yellow stickers on it, (they don't stick well to bubble wrap) then you get rid of that and you are to the plastic bag in your photo.  I had to slide back up and look, mine is a glorified zip lock bag, but the ominous labeling is similar to drain cleaner and possible hazard notes.  Then you unwrap or in this case unzip the bag and finally reach the actual pill bottle.  There is one more piece of tape that goes around the top of the bottle and reaches from side to side.  Finally you get to the pills!  Then you read the warning label on the bottle, wash hands if touching pills, that is the one that aways gets me...........ok I can wash my hands, but is taking the pill with water washing your throat?  I don't use soap when swallowing so am I missing a step here?????  I just saying............

  • Re: This got my attention ...
    p.a.m. Registered Users
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    Some post are quite funny, but this is CHEMO 100%.  Ask the maker of it. Or better yet, the government!  It is not covered under Medicare part D prescription drug plans or Part B, unless administered in a Hem/Onc office for a warranted situation. Humm Life/Death? I ask why and the response I receive is ORAL CHEMO such as this is not covered.  Sorry, I worked in major hospitals for 20+ years and in the research arena to long and saw way too much!  Doctors and Drug Companies---Cover Their A's all the way.

    • Re: This got my attention ...
      Happycat Registered Users
      Currently Being Moderated

      Probably call it chemo so they don't have to cover it

       

      And the cynic in me says Novartis calls it this to justify the high price. Definitely not based on reality of mode of action

  • Re: This got my attention ...
    Happycat Registered Users
    Currently Being Moderated

    I was thinking about this at work today. When you ship "hazardous materials", DEpt of Transporation regulations come into play, at least for shipping in the US. 

     

    So DOT regs say the hazards must be visible to those involved in the transport and the materials packed ina manner to prevent spills and exposures  Thus, the overpack with the polybag, as a method of secondary containment. Thus, the hazard warning labels on the bag  for the shipping, receiving clerks and drivers.  All this may very well be for the notification of others and not the patient.

     

    I went and looked this up today, and it appears pharmaceuticals are part of those DOT regs. In fact, hospitals are supposed to ship drugs and biologicals in a manner compliant to the regs. I get my gleevec from the hospital pharmacy, and I get it in a FedEx envelope, no hazards on it, no secondary containment. In fact, I kinda doubt FedEx knows what is in there.  So either they don't know the regs,  or the regs have more wiggle room than my brief perusal of them revealed.

     

     

    Traci

    • Re: This got my attention ...
      pammartin Registered Users
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      Traci,

      I see what you are saying and I can understand the concept, but mine comes in the plain brown cardboard box with no markings at all.  It is once you enter the box you hit the mega warning details.  I wonder why they can get away with unmarked (generic porn looking) boxes on the outside.  Oh and since I left myself out there for comment with the plain brown wrapper idea, I have a few ideas for replies.    Just in case

      • Re: This got my attention ...
        Happycat Registered Users
        Currently Being Moderated

        It is shipped without marking on purpose, to prevent theft.  Don't want to make it too easy for people to make off with the OxyContin!  The driver should have a manifest with the contents listed and probably some indication of hazard class.

         

        In the US, any DEA- controlled substance (heroin, cocaine, barbiturates - anything that is likely to be a substance of abuse) that is in a public accessible area (shipping dock, mailbox, etc.) can't have the name on it. At work, that means when we manufacture these substances, we can only draw the chemical structure, we can't write the name or even indicate it is DEA controlled. And I work in a locked, alarmed building. In our case, we are essentially "openly hiding" the drugs from the cleaners who come at night.  But this goes directly against hazard communication regs, which state everything in our hoods must have a name and hazard associated with it.

         

        Anyway, the point is, there's a lot of regs involved, and some conflict with each other. This usually means accommodations must be made to somehow satisfy each.

         

        Traci

        • Re: This got my attention ...
          pammartin Registered Users
          Currently Being Moderated

          Traci,

          I can't imagine how much work goes into the processing and sending out these and other drugs.  I won't revisit the entire story but my first two week trial of Sprycel was stolen off the UPS truck, even in the plain brown wrapper.  I do not believe it was because of the Sprycel, I believe it was because it was from Florida to Pennsylvania, and like you said, it could be something that is great for illegal resell.  Although we laugh and make fun of the packaging, we appreciate all the work that goes into getting us our meds.

           

          Teddy, I have to call at least a week ahead, it takes about 20 minutes to get the order processed, then I have to be here to sign for the delivery.  Some companies allow no signing, but I guess packages have turned up missing when left on the porch, so the long distance pharmacy I have to use because of insurance does not give option for no signature.  Sometimes I would like to be able to visit the local pharmacy for the med, but like you said it would still be a process in the end.

          • Re: This got my attention ...
            TeddyB Registered Users
            Currently Being Moderated

            Ah, local pharmacy probably isnt so bad then after all

          • Re: This got my attention ...
            0vercast Registered Users
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            I have to get my Gleevec through a mail order specialty pharmacy, and they'll allow delivery of a $9000, 45 pill bottle of Gleevec without a signature.  If it gets stolen from my doorstep because I chose not to have to sign for it, I found out that I'll have to pay for the replacement myself.  Insurance will not cover it unless it's the fault of UPS.

             

            UPS allows us to request that the shipment be kept at the shipping center.  What you need to do is get the tracking number from the pharmacy once the order is shipped, and then contact UPS and ask them to hold onto the package, and that you'd like to pick it up the day after it arrives.  That works better for me because it's hard for me to be at home sometimes during delivery hours because of work.

            • Re: This got my attention ...
              pammartin Registered Users
              Currently Being Moderated

              Over,

              That's a great idea, I looked into that also.  Problem is I live in a po'dunk area, the closest UPS or FED EX (never know which service the pharmacy is going to use) pick up location is about 2 hours away.  I might have to choose that option if I ever find enough energy to work again, I would not be here for delivery and like you said if it is missing, then we pay for replacement.  In my case it would be a squirrel, bear, or raccoon who steals the package, but don't think they would end up enjoying their find.

              Pam

      • Re: This got my attention ...
        billronm@roadrunner.com Registered Users
        Currently Being Moderated

        Hey Pammie,

           How many packages with a plain brown wrapper do you get a month? My Sprycel comes in an UPS envelope! I wonder what your mailman thinks! You know how those small town rumors get started. Especially since you have made yourself quite noticeable as the crazy lady on steroids. You haven't killed anyone yet have you?  How are you doing? Are your eyes still bulging? Really I do feel bad for you, so far I think you have had just about every side-effect that Sprycel has to offer. When is your next bw?

         

        And where is Judy? Is she doing okay? Tell her I said hi. I hope you all are staying away from the ticks (especially Bob). If he calls you up again for the same reason, make sure he isn't faking it!!!!! Luv Billie

        • Re: This got my attention ...
          pammartin Registered Users
          Currently Being Moderated

          Hi Billie,

          I am doctor shopping, when you have a minute email me yours again, can't find the email where you sent me that info.  The angioedema is still present, second round of steroids with little results.  I am convinced the Sprycel is causing the swelling, for some reason most of my side effects are now centered around my head (oh I am just waiting on your comments on that one) .  The red rash that comes and goes is on cheeks, between my eyes, and neck, the red hot left ear that looks like it is going to burn up on occasion, and now the swelling around the eyes.  I have no other fluid retention symptoms, ankles, hands feet, calves are all great.  I have called hematologist, oncologist, and both say they do not think any of it has to do with the Sprycel refer me to PCP, so I visit the PC doc and she tries her best to treat the symptoms but is clueless to most of what I am dealing with.  Hence my I doctor search.  I have looked in a few areas, but with insurance issues Cleveland Clinic is out of area, Philadelphia also, there are several doctors in Pittsburgh but none of them at West Penn are options because hospitals are now placing a 'no doctor jumping' concept, if you see one at a hospital you are not permitted to see another at the same hospital.  The search continues............  I am due for PCR test again in about 6 weeks, so I guess I will be at same place, but I am determined to find a new doc by fall.  I am also on a quest to dump local oncologist, I see no reason to have two or three doctors, almost every other person I have communicated with have a PCP and one cancer doctor.  Future goals

  • Re: This got my attention ...
    TeddyB Registered Users
    Currently Being Moderated

    You are all lucky you can get it via mail, i have to go to the local pharmacy and order a new batch, then wait 3-5 days, then go down to the pharmacy again to pick them up

  • Re: This got my attention ...
    besiscoe Registered Users
    Currently Being Moderated

    Good reminder, after 5 years I forget that I maybe toxic to the kids in my life.  Thanks, I must be more diligent.  I carry mineurn my purse and I really need to think of a safer way to transport this stuff.

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